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Helping Families with Huntington's Disease

HD Reach is working to improve the care and quality of life for those affected by Huntington’s disease. Founded as a nonprofit in 2009, we provide connections to medical providers, referrals to local services, care management, family support, education, and anonymous genetic testing.

 

We’re here for you. Call or Email: 919.803.8128 or info@hdreach.org

If you’d like us to know how to help you better, let's be friends. HD Reach is a private nonprofit organization. All information collected is held in strict confidence. All HD Reach services are provided through community based funding, donations, or private pay. 

  • Check our calendar for upcoming events: Both in-person and virtual. You can register here!

  • Register for upcoming webinars, or view past recorded webinars. Check out our library!

  • Check out our store for all kinds of HD gear. It's one of the easiest ways to become an advocate!

  • Sonya * Living With HD
    Sonya * Living With HD

    My name is Sonya Bailey, I am 54 years old and was diagnosed at 49 with Huntington's disease. I first learned about Huntington's when my father was diagnosed with it during the 90s. Huntington's at first was a difficult pill to swallow, but now I am grateful because it's allowed me to be closer to my grandkids and to be part of the awesome community at HDREACH – the sense of community, resources, and friendship they give our family makes me not feel alone in my journey. I always look forward to our monthly gatherings to hang out with everyone.

Background Mountain
  • People served through our family system model of care.

    15,000

  • People affected by HD in the US including 1,400 in NC.

    41,000

  • Americans at-risk for HD, including 8,000 in NC.

    200,000

August 17, 2026

HD Advocacy – Your Voice

byBetsey McFarland

We have all seen the impact our collective voice especially with the changes at the FDA this past spring. You can also be an important voice and advocate for legislation in Washington. Many bills directly impact care for HD patients and families. 

The NC Advocacy Team is hard at work this month especially, trying to catch the ear of our representatives and senators while they are home for summer recess. 

How can you help? Send letters/emails, make calls, show up at local events/townhalls or perhaps even attend a meeting as a valued constituent and advocate in someone’s office. 

NC has FOURTEEN districts (map with districts – see below) that we are trying to match with an HD family/patient that lives in that district. That’s A LOT of ground to cover. Do you know what district you are in? Check out this link.

Here are the various bills we are asking them to support this session. You don’t have to be an expert. But maybe pick one that resonates with your personal circumstances. They are much more impacted by your personal story. Be brave. 

The team has confident coverage in many districts. We are looking for folks in our HD Community to help us reach out to these districts: Rep Rouzer District 7 Wilmington to Fayetteville.  Rep Harris District 8 - Rockingham area; Rep Tim Moore District 14 Gastonia and Morganton area. Rep Adams District 12 Charlotte area. These representatives Davis (1), Ross (2) and Rouzer (7) are on the Rare Disease Caucus and are especially important. 

Next Steps: 

  1. Reach out to a member of the NC Advocacy team. Ask questions. Volunteer to help. 
  2. Reach out to congressional offices with voice mail messages in the local office or use the Congressional switchboard (202-224-3121).
  3. Send a letter (snail mail is so effective) to your local representative and our Senators. Advocate for their support of the bills mentioned above (or one that is particularly meaningful for you). Be sincere. 

Thank you for sharing your stories!

NC Advocacy Team: 

Shirley Hughes - shirlrn1@gmail.com

Marty Larson - mlarson102@gmail.com

Angela Sharpe - angela.j.sharpe@gmail.com

Thank you to our generous sponsors:

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